A Woman's Journey With Rare Disease

Government Relations Needs In My Own Backyard: Action Alert for PA Friends

I know I have a little work to do very shortly. It’s been a few years since I’ve been up to making the visits to D.C. to be out in front meeting with Representatives & Senators, showing them how medical research has had an impact on my life. This was something I enjoyed but was fortunate enough to have good training on in to be an active & effective voice in one’s own government. I was mentored in this realm from the nonprofit I did this work on behalf of. Yet no training is necessary….it is actually easier than most people realize once you start.

I see another opportunity here, in my own backyard, to do the same even if it’s just an email or perhaps trying to visit or call a few local offices…

This is HB30. Evidently, this simple & straightforward act has been put up a few times. It will be reintroduced this upcoming week. I’ll let the link outlining the legislation speak for itself, but hopefully this time; it will pass. (Along with its companion bill, Senate bill 180, that is also working it’s way through the PA Senate now, so there’s still time to support it.)

My PA friends, your voice counts. 2,000 lives lost in 4 years is still too many.

Please consider reviewing this legislation; sign this petition in support of the current companion bill in the Senate & consider emailing our local delegates in both branches to push these vital bills through.

(I’ll update this post in the future if I find an akin petition for HB30.)

Right now, over 8,509 lives are depending on this legislation to widen the donor pool to give them a chance at the most precious gift of all, a second chance at life.

Both links include sample emails to send out in support at the very least. (To follow the progress & share on social media please follow the hashtag #DonateLifePAAct)

Better yet, if you have not already signed up to be an organ donor & would like to, please do so here.

I will point out that as important as this issue it important here in my backyard, it is equally as important in the U.S & globally. Similar organ donor shortages are impacting the world in almost epidemic proportions.

For the past few days since I came across this article, I can’t get these images out of my mind. Maybe it is not meant to leave because it speaks volumes on the hidden struggle in this fight for life.

It’s a stark reminder of the hard reality facing all of us on this journey, no matter where we are in the process or geographically.

(Update 10/31. Did email & offer to set up appointments with area PA House & Senate delegates concerning this legislation to discuss stance/status on both bills. Will update further if anyone takes me up on it or replies back.)